ALS Newly Diagnosed
 

Dead End Ahead?
Contracting ALS (amyotrophic lateral sclerosis) is among one of life's most troubling diagnosis, it has no cure. Even a veteran neurologist has a tough time reaching this dreadful conclusion. When the testing begins, your surroundings turn to black and white followed by long sleepless nights. Your stomach is put on notice and your appetite disappears. You're hoping for something to go wrong or a medical error that produces a blessing. After two weeks of searching, hoping, and investigating, you're ready for the torture to stop. To relieve the stress you anxiously beg for any decision. All the while you are asking, "How could this be happening to me?"

This alarming decision has taken on the new look of a crisis and will take you to a new crossroad. You have just been diagnosed with a terminal illness, ALS. Your search for answers has only begun and probably by now you have already pushed the panic button. No one is sure what journey they will have or what their suffering level will be. Could it be that you have been harboring this illness for the last several years? This is your new battle, one you have never fought, but one you seriously need to prepare for.

That old adage "The Truth Will Set You Free" is the sword revealing two blades. You will load your mind with tons of medical information and a majority of that may not even apply to you. The progression of ALS and length of survival after disease onset are both highly variable from one person to the other. All this information may be detrimental to our health and can create an unnecessary lethal panic. We wrap ourselves in emotional fear but we forget one important fact. We still must live our life and we need to hope for better days, whatever the age. How is living life going to be possible?

Your first action plan is based solely on knowledge. How can I mentally prepare to take charge of every change that will affect me? There is a long string of medical definitions related to ALS and questions surround all of them. You should start with two basic categories, what are my physical and medical needs going to be in the next few months.

Action plan number two is based on the fact that you still need to live. The life basics are that you need to, sleep, eat, breathe and laugh. Maybe you have family and friends that will support you as long as possible, maybe you don't. You'll need close ties to a support network, if not you should find one quickly. In your search you'll find that a small percentage of ALS patients have lived more than 10 years. You may even have goals and dreams that haven't been met yet. There are ALS patients alive today that have overcome all kinds of odds and each day of life has had a new beginning.

It's not uncommon for you to be stuck at this crossroad but understand soon you must make choices. The real solution is a peaceful mind followed by your choice of religion or spirituality. If it's any consolation, God is not going anywhere, and he'll always be there when you need his consultation and guidance. Believe in Hope.

Our wonderful neice lost her battle with galloping MS but your beautiful words J.M.C. reminded me of what she wrote on learning of her dx...


"And you thought pMS was bad....

It's been a week and a day since I was told the preliminary diagnosis.
M.S.
It sounds like some ironic payback for radical feminist ideals
But it's Multiple Sclerosis.
A name which still appears to be spelled wrong, no matter how many time I write it.

It's a label laced with doomfilled images of wheelchairs and dependency.
A pair of words that conjurs up loss and grief and so many fears I am unable
to name them all.

And yet after having devoured two rather comprehensive books on the subject; turning 35 years of my personal life perspective around,
and weighing my words with the dozen or so friends I've shared the news with..
I find that despite an understandable case of shell shock,
I'm actually in pretty good shape. Whatever that may mean from moment to moment.

No one who loves me enough to be honest will tell you that I am anything other than a control freak.
So it cannot be anything less than a humbling experience to now find myself linked inexorably with a disease that, if nothing else , is known for its unpredictable nature.

Right now I am numb from my chest down.
Though I have regained some feeling in my thighs.
My feet and fingers burn with the simple exertions of walking, standing and
writing.
Tomorrow I may be fine.
Tomorrow I may not be able to walk.

This is a test. This is only a test of your central nervous system.
If this were an actual emergency you would be instructed to...
What? Panic?

The M.S. and I are partners now. It may, if I am lucky enough to go into a long remission, become a silent partner. But it's here with me.
I feel the need to be introduced.
I crave some opportunity for influence with this interloper.
But this is where my journey really begins.

This is where I meet myself in the loss of control.
This is where the mystical quality we call strength solidifies into something
positive and I get to built my character some more. Oh goodie.
Is this also where I get to throw dishes?

Pamela Ogden Sparks Novenber 28, 1997


**************

Hope springs eternal, but she ran out of time. :grouphug:

Alffe, I am sorry for your loss and after reading this over and over I understand how special your niece must have been. We all must face our fears whether we want to admit it or not. Pamela thought of facing hers with dishes. David faced his with a single stone. Some might say "Why not Me" or "Bring it on", but no matter how fearful or faithful we are, we understand, we will not have the strength to slay our Goliath.

Dave
 

Hello - I'm Dave and was diagnosed with ALS Aug. 20
1997 -- and yes I went thru all the difficult feelings (& anger)
that you mentioned -- and fought to live another month. The
Doctors gave me 18 months to live -- went for a 2nd opinion and
went thru the tests twice - and vowed never again.
Then left Traditional Med and entered the vast world of
Alternative Med --- mainly vitamins & therapy -- no prescriptions.
Now it is 12 years and 4 months later -- I'm not cured - but
still lead a fairly normal life -- have to use a cane to walk.
If you are interested - I have some good info that worked
for me.
Happy Holidays, dave

Your wonderful long life
 

Hi Dave,
My fiancee was just diagnosed yesterday (1/4/10) with ALS. I would be interested in what non-traditional medicines you are taking. He is the love of my life and I cannot bear to think of my world without him in it.
Thanks so much for your time.
Patricia

hello
 

i had lyme for the 2nd time so they thought and then my legs got stiff and i could barely walk on my own i ended at yale before my dr. after being tested for 2 yrs i found out i had als so he sent me to NIH in maryland to find out who else in my family had als my dad feels bad he is my carrier but has no systems i have have nerve pain for 4 months now they keep chaning my drugs hoping one will work none has so far i wish u luck and ill pray for u :)

Newly diagnosed with ALS
 

Dave,
I'd really like to know what suppliments and therapies you are using.
Thanks,
Oliver